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Tessa’s Superhero Story

A Day in the Life of a Family Living with SLC13A5 – Geslin Family

Maria is the mother of Alice (5-years-old), who has SLC13A5 Deficiency. Maria and Alice live in Luxembourg, with Alice’s father, sister, and maternal grandmother. A Day in the Life Alice is our rare pearl – this is what we call her, since SLC13A5 Deficiency is so rare. Even if she can’t walk or talk, she […]

A Day in the Life of a Family Living with SLC13A5 – Prestine/Pae Family

Erika and Andrew are the parents of Ellie, who has SLC13A5 Deficiency. Our days with Ellie (who is almost the big 4!) are typically filled with a lot of love, patience, and laughter. We like to call her our little Sour Patch kid. She is full of spunk, stubbornness, and mischievousness, but she is also […]

Shopping for Kids of All Abilities

By: Kim Nye – Mom to four great kids, ages 6 to 15. The holidays are here!  It can feel difficult to shop for a child with developmental delays.  My friends and family are always asking for gift ideas, especially for Tessa (15) and Colton (6) who have SLC13A5 Deficiency.  To make it a little […]

Three Fun Crafts For Everyone

By: Lily N. Hi my name is Lily, and I am 12 years old. Two of my siblings have SLC13A5 Deficiency, which means they have seizures and a harder time learning. Since my siblings all have different ability levels, we can have a hard time finding crafts to do that we all enjoy. Luckily, there […]